My Own Country

by Abraham Verghese

  But the doctor sat against the wall in the examining room, putting as much distance as he could between Petie and himself, appearing to try not to breathe if he could possibly help it. Suddenly, the years of their relationship as patient and physician, the Virginia smoked ham she sent over every Christmas, none of this seemed to exist. He told her stiffly that he had no experience with this disease. He offered no suggestions as to who else they could see. Conversation came to a standstill until Mrs. Granger understood that she was expected to leave. The office staff had vanished. All the doors of the doctor’s office had been left conveniently open for them so that neither Mrs. Granger nor Petie would need to touch a doorknob on the way out.

  After that they kept looking for a physician, going systematically through the Yellow Pages in their town and neighboring towns, candidly explaining what it was Petie had. They could not get an appointment.

  Meanwhile, Petie had developed a perianal abscess that had become acutely inflamed. His father took him to see a surgeon, a man who had treated the father for two hernias and an ulcer operation and whom the father considered a friend, a fellow lodge member.

  “They treated Petie like dirt, and made me feel like dirt for being with Petie,” the father related to me.

  The surgeon, a little more venturesome than the internist, did examine Petie perfunctorily: he had Petie spread his buttock cheeks while he peeked. Still, he apparently felt no need to use his gloved hand to palpate the area, though he wore the gloves throughout the interview. Instead, he prescribed antibiotics and referred Petie to another internist in a town fifty-five miles from Petie’s hometown. But he also had a reason why Petie could not be seen.

  When I finally saw Petie and his mother in my office, seventy-five miles from their home, there was an expression of fear on their faces, as though they expected to be kicked out any minute. They had reached the point where they had contemplated moving back to Baltimore with Petie so as to get some kind of care. It took several visits before they began to believe that they had a right to medical care. The family had been made to feel like pariahs because of the disease that affected their son.

  I gave Petie and his mother the one thing the family wanted most: a promise to take care of him in the months to come, no matter what happened. The fact that I had no therapy directed against HIV to offer him was almost unimportant.

  BUT IT WAS IMPORTANT to me. I was tired of being a watchdog for the town, seeing the disease trickle in. And despite my medical journals, I was in an informational black hole in Johnson City.

  I missed out on the scuttlebutt about who was doing what in AIDS research, the kind of thing that you could pick up every week in a city like Boston with three medical schools and over ten major teaching hospitals and many combined conferences and exchange of speakers. In 1985, when I was a fellow in infectious diseases in Boston, I heard Max Essex from the Harvard School of Public Health lecture to a small group of us at Boston City Hospital and state unequivocally that he was sure a retrovirus would turn out to be the cause of AIDS. This was before Gallo and Montagnier proved that to be the case.

  I took my cue from my patient, Fred Goodson. I began to subscribe to publications like the PWA (Persons with AIDS) Health Group Newsletter, AIDS Treatment News and the GMHC (Gay Men’s Health Crisis) Newsletter of Experimental Therapies.

  Vitamin C—doses up to 70 grams per day!—was one therapy being advocated. As many of the initial proponents of this treatment died, so did its popularity. But I added reasonable doses of vitamin C to what I recommended on the first visit. It gave me satisfaction to write a prescription for something—anything.

  Then there was DNCB, a benzene-derived chemical which when placed on the skin could induce a response of the cell-mediated or CD4-lymphocyte-mediated wing of the immune system. A dermatologist in San Francisco had reported promising results with DNCB: the CD4 count had shown a small blip in an upward direction. The chemical was available in photo supply shops, and pretty soon guerrilla clinics were preparing and administering this drug to gay men. These were forerunners of the buyers’ clubs that would undercut regional pharmacies. DNCB was also the first illicit drug to make it to Johnson City. Both Fred and, later, Otis showed me the dark patches on their skin where they had tried DNCB. When clinical centers began testing Isoprinosine and ribavirin—two new antiviral drugs—a black market in these drugs began, the drugs being smuggled in from Mexico. But the clinical trials concluded that the drugs were of no use.

  Among the many drugs being tested against the virus in test tubes and in small open-labeled trials, one called AZT was getting a lot of press. In the preceding year—September of 1986—a placebo-controlled trial of this drug, a study involving many different universities in the United States, had been stopped prematurely. The agency that monitored the study found that after six weeks on the drug, persons getting placebo were dying of opportunistic infections at a much higher rate when compared with those getting AZT. The trial was halted because it was considered unethical to go on giving people placebo. The results of the trial had not as yet been published, but even so, in January 1987, an FDA advisory panel recommended to the FDA that the drug be approved for marketing for use only by HIV-infected persons who fulfilled the definition of AIDS. The Burroughs-Wellcome Company, just down the pike from us in Research Triangle Park, estimated that even if the drug was approved, it might be May before they had enough drug to supply patients who qualified to receive it.

  After so many false hopes, I tried to remain skeptical. But it did seem at last that there was a treatment out there that held promise.

  Duke University was one of the centers that had participated in the initial AZT trial. It was reportedly also involved in the next phase of the AZT trials: seeing if the drug would work in persons who did not yet have full-blown AIDS but instead were relatively asymptomatic though with CD4 counts less than 500. Duke was only five hours away, a neighbor of Burroughs-Wellcome.

  I was most concerned about Otis Jackson, Fred’s partner. Where Fred had much energy and had become an activist, Otis seemed to be fading. Each time I saw him he appeared a little more passive, a little flatter in his affect, almost as if the disease was happening to someone else and not to him. When they came to visit, Fred had to prompt Otis to tell me about the night sweats, the weight loss. And when he still did not mention them, Fred would sigh, then pull out a paper, and recite for me his observations of the last few weeks: fever, diminished appetite, strange dreams from which Otis woke up having drenched the sheets. I thought it was urgent that Otis get on a trial.

  I called Fred’s house but got no reply. I sat down with Carol and we made up a roster of patients we would call. Over the next two weeks I would set up appointments to see every patient I was following and suggest they consider going to Duke to see if they could be enrolled in an AZT trial. If they had full-blown AIDS they would immediately qualify for the drug. If they did not, they still might qualify. I would make appointments for them and put together a copy of their medical records. It was a bittersweet moment for Carol and me.

  LATER THAT DAY, I ran into Bettie Lee, Fred’s sister, who had come to see my secretary Joyce to drop off more TAP brochures. She told me that Fred had gone down to Knoxville with Otis to see friends. I told her about AZT and Duke University and how I felt Fred and Otis ought to try to get on a clinical trial.

  “God! Fred is going to love it! When Fred and Otis found out they were infected—just before they came to see you—the first thing out of Fred’s mouth was that he was going to beat it. I remember he was talking a mile a minute, it was really bizarre. He just went on and on: He was going to find out everything there was to know about it, find out every treatment that was being tried. By God, he was going to beat it, and on and on . . . Maybe this is it.”

  “And what did Otis say when he found out?”

  “Otis just looked at Fred. He never said a word. Otis had this hangdog expression on his face, kind of like he knew it was all over. He wasn’t
even sad. Just subdued, without any hope. A condemned man.”

  This was the first time I had been alone with Bettie Lee. When she and Fred were together it was easy to see they were brother and sister. Bettie Lee was heavyset, with dark hair parted in the middle, a slight lisp, and a beautiful, musical voice. Her manner and dress—loose tie-dye shirts or batik smocks, sandals, a paucity of makeup—made her look like a sixties flower child. Her AIDS activism lacked the militant, confrontational edge that Fred’s could take. Her style was more earthy, more gentle, but every bit as committed as Fred’s. She tended to make things happen by cajoling and persuasion, whereas Fred might have invoked Robert’s Rules of Order. The content of her speech had the occasional allusions to Nietzsche and Kierkegaard—she had a degree in psychology—but these names tended to be invoked with wonder, as part of a reflective statement, not as part of a high-toned rhetoric. I was intrigued at how devoted she and Fred were to each other and yet how different they were in personality. I asked her about Fred as a child; I asked her when she first knew he was gay.

  “The first time I knew Fred was gay? I was sixteen and a girlfriend came to me and told me that Fred was gay—he was twenty-two at the time. I sort of went ‘Ah-hah!’ to myself. That’s why he didn’t do anything with June and Sarah and anyone else. And after that, once I knew, we became closer. I guess I let him know that I knew. It was a time when everyone was smoking pot and so we’d go and do it together.”

  “What stopped you from being condemning of that lifestyle?”

  “My father has always been really open. We had this huge house that his father had left him—the family was real old Morristown stock. He really believed people were different and there was no need for everyone to subscribe to the same doctrines. My father had black friends from way back. And when there were a group of Cuban doctors at the Greene Valley Development Center—still are—he was always having them over for dinner and cookouts. Our house was the house where all the teenagers gathered because my parents were ‘cool.’ So, I guess when I found out about Fred, I was cool. Which is not to say that my parents, when he told them, were cool. But they learned to accept it.”

  I asked Bettie Lee at what point she had become aware of AIDS.

  “I guess it was 1983, when he moved back for good to Morristown and began with the accounting business. I got to spend a lot more time with him. I was married and divorced by then—got married in high school—and I lived in Johnson City. I think it was when Rock Hudson died that I really became aware of it. . . . Now that I think of it, Fred had mentioned ‘gay cancer’ before that. Said it in his usual, semicynical way—you know how he is. I didn’t know if he was joking or what. I asked him if he was concerned—he said no, it’s just in the big cities.

  “But there is one incident I always hark back to: it was in 1983, me and my girlfriend met up with Fred and one of his friends in Kitty Hawk, on the Outer Banks—North Carolina. You been there? Well, anyway, Fred and his friend met us there after they had visited New York City. And I remember them laughing and mentioning the bathhouses, and I was thinking to myself—why would they want to do that? Go to New York City? Undoubtedly have anonymous sex. Isn’t it dangerous?”

  Bettie Lee paused as if something was occurring to her.

  “You know this was a time of lots of excesses. I mean alcohol, drugs, partying—not just sex. And as I think about it, it was there, at Kitty Hawk, on the Outer Banks, that he brought up gay cancer! And I always look back at that trip to New York as where he got it.

  “He told me right after he got his test. Came to our house. By then I was married again. Fred and Otis had been living together for about a year by then. They both came up to the house, sat around my kitchen table, just up and told me: ‘We tested positive for the AIDS virus!’ I was so shocked! Total disbelief! Didn’t know what was going to happen next. And how could it happen here? Not here, in east Tennessee!

  “I remember I kept trying to find someplace to put the blame. I blamed Otis, to tell you the truth. After all, Fred had been back for some time now. It was Otis who had been living in San Francisco and had just moved back. This is horrible—but I even wondered whether Otis had come back from San Francisco because he was sick! Could he have been looking for a relationship where someone would take care of him? When I was more rational, I blamed Fred’s trip to New York just before he came to Kitty Hawk.”

  “Did you worry about your risk?”

  “That really wasn’t on my mind at the time. And when Fred told me about his test, he also pretty much told me all that he knew about the disease—and he knew a lot. Told me that I wasn’t at risk, told me how it was spread. But he wanted me to go and get tested. Even that, I think, was not so much for me, but for him to use; to be able to say later, ‘Look, I’ve been close to my sister and nothing has ever happened to her.’ I got tested and was negative and I’ve never tested again—don’t think I need to.

  “But I remember one time, when Otis was ill, bringing Otis’s clothes home to wash and suddenly starting to think if this was smart. My son, Bill, was a year old. But I got over it just by talking myself through it.

  “I’ve never been one to drink after someone, you know, out of their cup. Just plain unhygienic. The first time Fred and I shared a Coke or else shared a cigarette, it was a little spooky. Since then I’ve done that with Fred several times, even though I wouldn’t normally. I do it just to make a point with people we are around, particularly at TAP.”

  I SAT DOWN WITH Fred and Otis in the clinic the next day.

  “Look,” I said, “for the first time there is a drug out there for HIV that shows promise. But it may be a long time before it makes its way to my hands, and even when I am allowed to prescribe it, it will probably be restricted to those with full-blown AIDS and neither of you would qualify. If I were you, and if I were pulling out all stops in trying to fight this, I would go to Duke and see if I could be enrolled in their AZT studies on early HIV infection. I will be happy to give you a letter and forward all the records they need.”

  Fred stood up ready to leave almost as soon as the words left my mouth. As if he was going to drive straight to Durham. Otis slouched on the stool and asked, “Well, how do we know if this drug doesn’t wind up hurting me?” and a number of other “What if? ” questions. When Otis walked out, it was with drooping shoulders, as if he didn’t need this hassle. As if I had given him bad news.

  Fred came by the next day to pick up his and Otis’s records. I sensed from Fred’s mood that Otis remained reluctant, fatalistic. I asked about Otis.

  “Otis is Otis. You know how he is.”

  “That’s the point. I don’t really know Otis too well. I’ve never seen him alone and he’s never ever had much to say.”

  Fred’s manner softened. I think he felt he needed to explain Otis to me, or at least explain why Otis was his partner.

  “Otis is different. He’s tricky to understand, but don’t hold it against him. See, Otis is real country, not as sophisticated as he appears. He left home years ago. I think his leaving was precipitated by his family finding some letters between him and a male lover. All hell broke loose with that. His whole residence in California, in the Castro, was all about estrangement from his family. He lived there for seven years—1978 to 1985. Otis, like many gay men, has inherited such a burden of guilt that it tends to make him pessimistic, negative—almost as if he’s more comfortable with bad stuff happening to him than good stuff.”

  I couldn’t help reflecting that Otis had been in the Castro—1978 to 1985—at the height of the silent spread of the virus through the gay community there. Otis had probably celebrated Gay Pride Week, been on the same dance floor with Gaetan Dugas—Patient Zero. It was not beyond the realm of the possible to imagine that Otis had slept with the Air Canada flight steward, or slept with someone who had slept with Gaetan, or . . .

  “Did you meet him in San Francisco?”

  “Oh no. I had been there, even spent a month there, and we�
�ve talked about how we must have crossed paths. But no, I met him back here. I’m not sure exactly what Otis was up to in the Castro. I know he got shingles when he was there. And I think what precipitated his leaving was that a relationship ended and left him without a place to stay. So back he came to east Tennessee. And when he first came back, though he never told me any of this, he was down with severe shingles for six months. It came again and again on his chest. We met in 1986 through a friend. By then he was healthy again. In fact the first time we met, we, harrumph, hit it off quite well, I must say. . . . For a while we dated, then we finally moved in together.”

  “Did you practice safe sex when you met?”

  “We both ignored safe sex. We were both in denial. Otis didn’t tell me he’d been sick. But then, I didn’t tell him I had been to bathhouses in New York or Atlanta. I didn’t have to tell him—he probably assumed it about me just as I assumed it about him.”

  Fred paused here and his voice became very soft: “That was one of the major reasons for my joining TAP, for my spending time I don’t have working with TAP. I want us to hold ourselves out as examples if necessary. Before I was diagnosed, I felt immune; my denial was very strong. You can talk yourself into anything in the interest of sexual release.”

  MEANWHILE, back in the hospital, Will Johnson was marginally better. He still had pain when he swallowed. But his fever was gone and he had regained five pounds.

  I was spending a long time in his room each day—it was almost impossible to be in and out in less than an hour. I took to visiting him in the evening when I had finished seeing all my other patients.

  Each time I walked in he perked up, made room for me on his bed and asked me to tell him how my day had gone. He focused his attention on what I was saying as if it was the most important thing in the world. I found myself describing to him my problems: the pull between the VA and this private consultative practice at the Miracle Center. The long hours. The effort to publish and to bring in grant money to keep my technician and lab going. The young family I had at home. My presence in his room was part of the stress on my marriage: AIDS had become a mistress that took me away from home and that I could not introduce in conversation when I was at home.